MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Wednesday, 28 September 2011

Today there was some good news from the High Court. The family of Patient 'M', who's in a Minimally Conscious State, were denied permission to order her life support (food and water) to be turned off on the grounds that she would not want to "live a life dependent on others". There are thought to be thousands of people in a similar situation. It was an example of what could happen when families think they can second-guess their incapacitated relatives. However Mr Justice Baker ruled against the family, and I'd say in favour of the patient: "The factor which does carry substantial weight, in my judgement, is the preservation of life. Although not an absolute rule, the law regards the preservation of life as a fundamental principle."

That's a principle worth maintaining against the tide. I'm glad it's been upheld. I expect there'll be moves to get the family to appeal, though I trust not. It's all very well to encourage people to write down their wishes about dying, as the family lawyer said after the verdict. It's long been known that apparently unconscious patients are more aware of their surroundings and conversations than we imagine. How awful to be aware of being slowly starved to death! That's not something such people will suggest you anticipate, will they? And when will they stop peddling the lie that a dependent life is not worth living?

Tuesday, 27 September 2011

First we discovered that dinosaurs weren't all the scaly or pachyderm monsters of popular films and TV programmes, but that some had feathers "just like our pigeons in the park". I feel a tiny bit guilty that my children grew up with Usborne picture books, which have given them quite the wrong impression. Oh dear, oh dear!

However now something much more fundamentally serious has raised its fascinating head, emanating from the CERN laboratories in Geneva. That is that particles (neutrinos, I think) seem to be travelling faster than the speed of light. BUT THAT'S IMPOSSIBLE - according to Einstein's Theory of Relativity. It would mean that one could travel backwards in time - even if, so it seemed to this non-scientist, rather slowly. Well, the European scientists reckon they've checked and double-checked the improbable findings; the Americans at Fermilab in Chicago, it has to be said, are sceptical and reckon their transatlantic buddies have overlooked some tiny but significant detail and are setting out to "prove" it.

When the news broke, there was quite a bit of fluttering in the dovecotes of physics. On the World Tonight programme on Radio 4, the space scientist, Dr Maggie Aderine-Pollock, had an excited conversation with presenter, Ritulah Shah. Aren't you frightened, she was asked, that this undermines your whole scientific world? "If this experiment is correct," she replied, "it is slightly scary, because it means we’re stepping into the unknown, but at the same time there’s a real sense of excitement, because what will we find instead?"RS: "So do you think the popular view of science in which, arguably, science provides all the answers is very misplaced?" MA-P: "I think we went through the same process in the 1950s in relation to medicine - doctors knew it all." Now we know they don't. "Science is an evolving process."Then Ritulah Shah asked this very interesting question: "If the CERN experiment can be replicated, if the data can be stood up, then would it be better for the popular view of science to be one of science delivering new questions and discoveries rather than of one of it delivering the answers?" and received this equally interesting and honest answer: "Yes, because 'answer' sounds as if we have all the answers and we've got it done and dusted; and that isn't how science works. Science works... as an evolution.... We don't have answers; we have evolving questions." Now that, to me, sounds like real science - and to be true, whatever the outcome of the neutrino debate.

And it reminds me of Socrates' wisdom, as related by Plato: "This man, on one hand, believes that he knows something, while not knowing anything. On the other hand, I - equally ignorant - do not believe that I know anything." There's a conditionality which popularisers of science seem unable to grasp, bestowing on scientists an omniscience which the best of them would not claim for themselves. Science is a voyage of discovery, not a destination.

Thursday, 22 September 2011

It's ironic that Julian Assange, founder of Wikileaks, has been trying to stop the publication of his "unauthorised" autobiography by Canongate, a small UK publisher. The self-appointed crusader of free speech has been hoist by his own petard. I used to think he did us a favour by blowing the cover of secretive government.

However, this week Andrew White wrote a short message on Facebook (which has infuriatingly changed its format) from St George's Church in Baghdad: "I am afraid to say that the situation for the Jewish community here is now very serious, as it is for the two people who help them. Their names have also been published by Wikileaks. We have no option but to try and get them all out of here. This is such a serious issue and Wikileaks obviously do not care if they threatened the lives of already the most at risk community in the world. Any credibility they ever had has now gone as far as I am concerned. Will you please pray for their safety until we can get them out."

Someone recently told me that a lot of the "rioters" were out on the streets because they had never learned empathy. This seems to me another and more sinister case of lack of imagination or empathy. And this instance, there's no excuse.

Tuesday, 20 September 2011

Well, for a time my home was just down the road from both; and I've been in both of them. One is Clifton College, where I went to school. The other is Stepping Hill Hospital, where I used to visit as a curate, not least when they were fighting for my son's life (maybe that's a slight over-dramatization, but he was desperately ill!). This year, however, they've both been in the national news for much sadder reasons. At the New Year, Clifton hit the headlines in connection with the murder near Bristol of the young architect, Joanna Yeates; Stepping Hill hit the news in July over suspicions of patients being killed with contaminated saline.

Today the BBC website for a time ran a headline: "Saline nurse 'scared' to go out". It was referring to Rebecca Leighton, the nurse at the hospital who'd been accused of tampering with the drips but since exonerated. It brought to mind the way the media presumed the guilt of Christopher Jefferies, Jo Yeates' landlord. He had been an English teacher at Clifton. He also proved to be innocent.

What both Jefferies and Leighton had in common was to be tried and found guilty by the press without trial, and without justification. I was glad to see that the headline had been changed to "Released nurse 'scared to go out'". Whether the press will ever learn is doubtful. But the damage is done. In her interview, Rebecca Leighton said, "I find it hard to look any further into the future than right here and now, but I'd love to have my life back, exactly how it was before." I'd love to have my life back... The pen is mighty, or, as St James said, "How great a forest is set ablaze by such a small fire! And the tongue is a fire, a world of unrighteousness." It's a dangerous lie that "words can never harm me". Words can do irreparable damage.

Saturday, 17 September 2011

I don't listen to the BBC World Service so much these days, but this morning I happened to tune in to The Forum. The format was a three-way discussion this time on the subject of Activism. The participants were a French architect, a South Korean economist, and an Australian "anarchist" poet, John Kinsella, who's a fellow at Churchill College in Cambridge. It was a provocative discussion.

I was particular interested in their discussion of language, kicked off by the poet who advocates "linguistic disobedience", which I think means resisting the way that language is used as a system of control' ie scepticism about words and control. It reminded me a bit of what I wrote yesterday about the Nazis' use of "compassion" in the early 20th century. We have not to collude when language is manipulated by those with power and influence. For example, government spokesmen construct the myths they want us to believe by their selection of terms - as the saying goes, one man's terrorist is someone else's freedom-fighter. Kinsella talked about writing a poem trying to prevent the death-sentence on an Australian in Singapore in which he stripped away the rhetoric and describe the event as it is: "the executioner will eat a meal before and after"; as he said, "Anyone who takes a life is a hypocrite." When meanings are hijacked, imperceptible control is exercised without our realising.

It's a technique I've come across among the campaigners for euthanasia. The Voluntary Euthanasia Society (whose purpose was what it said on the packet) rebranded itself, a few years ago, as Dignity in Dying, and took to talking about Assisted Dying rather than Suicide. There are four ways of dying: natural death, accidental death, being killed and killing oneself. There's also an attempt to hijack "compassion" to legitimise putting an end to someone's life prematurely. One needs to ask, "What's the agenda beneath replacing plain English with gobbledy-gook?"

Other interesting hijackings include "having a baby" and "marriage". Picture a couple. The wife discovers she's pregnant, "Honey, we're having a baby!" The politically correct man replies, "No, dear, you're carrying a foetus." And I guess 99% of the population would consider "marriage" to mean what it's always meant, the union of a man and woman for companionship, procreation and family life. But not for much longer. The meaning of the word is being manipulated to create a new myth.
I'm indebted to Paul Huxley for this sardonic comment on the official redefining of words."Square circles to become legal

"In a groundbreaking move, the government is set to introduce square circles.

"The Deputy Minister for Shapes commented: 'It is time that we gave true equality to circles, not only to rectangles. Why shouldn't circles be considered square?.'

"Under the new law, mathematicians and geometrists who object to this redefinition will be allowed to continue using the old definitions, and definitely won't be forced to use the new terms in their research papers. However, all Maths teachers will be required to use the new definitions with their students.

"A spokesman for the fundamentalist group, The League of Geometrists, objected to the new rules: 'How can a circle be square? It is a contradiction in terms. If it remains circular, how can it consist of four lines of equal length?'

"But the Prime Minister, supporting the move, said: 'This move will be supported by all tolerant, welcoming, broad-minded people.'"

Friday, 16 September 2011

OK, so temperamental televisions channels are a minor inconvenience, but some things which are portrayed as "simple" are far more significant. You could say they're a matter of life and death. I've met Katherine Araniello a couple of times. She's a conceptual artist, and she's thoroughly disabled. She appeared on 4Thought TV in the summer, talking about suicide.

Today she wrote a thought-provoking extended comment on Facebook, to which I responded:

Assisted suicide – The continual debate

What concerns me is the constant bombardment of how terrible it is if one does become disabled or they have a terminal illness and the negative imagery this places on anyone who isn't fit and healthy. People who are living with disabilities and terminal illness are in fear of their own lives being ended prematurely when they go into hospital because of the viewpoint that someone who is so ill or so physically dependent on others cannot possibly want to live – There are cases in which disabled/terminally ill people are in hospital and the only reference to them is the function of their body – e.g. it may be that they are on full-time ventilation – they require 24-hour assistance – and it is these people who are rendered as having no quality of life. There are cases in which such lives have been taken over by the medical world who believe that it is fair to not resuscitate someone who is so ill or disabled. These are the facts and these are the fears and these are the realities of the 21st-century that we are living in –

Earlier Katherine had made a comment about fascism, and I began my response from there:

Interesting, isn't it, that our society dislikes "travellers" - one of Hitler's target-groups? And I gather there are attempts to exclude the holocaust from history syllabuses for fear of "offence". I've just watched "Band of Brothers" withits horrific concentration camp scene. "Ah, but we could never get to that HERE!" Well, it began in Germany with doctors dispensing with the absolute sanctity of life. The phrase "the right to death has a sinister history: it recalls vividly the entire reasonableness of the successful campaign in Germany during the 1910s through to the 20s and 30s to convince the medical profession that “assisted dying” or “sterbehilfe” for those with an impaired “quality of life” (to use a modern expression which also has sinister historical overtones) as morally acceptable: a book published 13 years before Hitler took power, The Permission to Destroy Life Unworthy of Life, Binding and Hoche’s Die Freigabe der Vernichtung Lebensunwerten Lebens, together with Jost’s Das Recht auf den Tod (The Right to Death) [remember Sir Terry’s “right to die"?] had a huge influence on the German medical profession and without doubt paved the way for the Nazi euthanasia programme" (William Oddie). It probably wouldn't get that far here, but we should be warned that there are dangers in the idea of compassion. That's how the Nazis portrayed euthanasia.

But you're right, Katherine, that there is a sustained negative portrayal of disability and dependence, which is both insulting, untrue and creates an atmosphere of fear. Actually we ARE ALL dependent, interdependent, and it's NOT degrading or demeaning to need help. We need to embrace that reality, not run away from it and try to scare others into running away too. "No man is an island" is true. You and I are pretty much 100% dependent on others, but your life is amazingly fulfilled, it seems to me, frustrating but fulfilled.

The mantras of "compassion" and "my right" sound simple, but they aren't. Things never are; they really aren't!

Oxfordshire's in the middle of the television digital switch-over, which seemed to be designed to make a generation of sets redundant, and create a whole new market for freeview boxes and digital TVs. Anyway it began this week. Being disabled I was eligible for the government scheme for help to make the transfer including a digibox. However I declined, as we already have one, and, so they said, it was just a matter of retuning the box.

All I can say is it's a good thing the rugby World Cup's on ITV, as the BBC reception here has been rubbish with all the channels duplicating themselves and cutting out to a blank screen within seconds. But fortunately ITV got the rights and my viewing hasn't been subject to that awful frustration - except yesterday when Pam Ayres appeared on the One Show. She of course was born and bred in Stanford in the Vale, and has just produced the memoir of that time, The Necessary Aptitude. According to the publishers:

"Pam Ayres' early childhood in Stanford in the Vale was idyllic in many ways, and typical of that experienced by a great swathe of children born in rural areas in the immediate post-war years. Though her parents' generation was harrowed by war, better times were coming. Everything the family needed was within walking distance in the village, and life with four older brothers and a sister in their crowded council house was exceedingly lively.

"In her late teens, Pam grew dissatisfied with her life as a Civil Service clerk with only the local 'hop' for scintillating excitement. Having seen three of her brothers called up for National Service and sent off to exciting destinations, Pam felt desperate for travel and adventure. She joined the WRAF and soon found herself in the Far East. There she began to write in earnest, and develop the unique talent that would make her one of Britain's favourite comics...

"Written with Pam's much-loved combination of humour and poignancy, The Necessary Aptitude is a beautifully written memoir of her early years."

Fortunately, I've since been able to listen to the programme on iPlayer. She is genuinely nice and unspoiled by success.

Eventually, having googled duplicating channels in digital switch-over, I discovered that I was one among many having problems. It wasn't as simple as we've been told - things never are. I think I may have solved it now - but I'm not counting my chickens.

Thursday, 15 September 2011

We had one of those excellent lunches which occasionally happen on Tuesday. It was with our friends, Peter and Ann. Peter, like me, has PLS. Like me, he was a teacher. He seems to have an endless supply of jokes - which is good medicine. We met in the coffee-shop at Bicester Garden Centre (not up to Cornerstone in Grove, of course, but not at all bad).

We had a merry time comparing notes.We have very similar stories, we realised, although Peter was diagnosed about 5 years before me and has only just stopped driving. He tells me 1 in 5 million have PLS. We certainly agree that our wives are 1 in 5M! He and Ann had a lovely way of describing PLS - which was something like "Not an end of life, but a change of life."

Peter, like his namesake, has a lot more physical courage than me - and so he's had a lot more falls. And he seems to bounce better. Whereas I go rigid when I fall, I think he has mastered the art of relaxing, which, as horseriders know, makes all the difference.

Last week I had an email from my friend in New York who has ALS (as they call MND). She lives in an apartment on her own - and of course there's no free National Health Service in the States. Her rollator (zimmer on wheels) was faulty. So she rang the ALSA repair man, but he failed to return her call. "I was ironically going to my desk to call ALS to see if someone else could set up the exchange, and the rollator was in front of desk - I'd been using it as a tray around my apt..... I'd sat on it before just to see what that's like. I decided to sit on it to make phonecall... and down I go!
"Hit my butt, arm and then my head went back to the wall, a part where two sides come to a point! Shocked and alone, I put my hand to my head, and all blood..., then sat on my bed thinking I could just put some vaseline on it and no biggie, but, exploring the wound, I knew it meant stitches, small but deep.... All day in the ER, CT scan and waiting for neurosurgery to attend! Actually treatment just two staples, five minutes, and they discharged me OK...." She ended with a three-day stonking headache, and of course the worry over medical insurance - as well as a useless rollator.

Peter told me that one year he fell 255 times. I don't think he was joking.... I imagine it was when he could pick himself up. Otherwise the paramedics would have had him on their blacklist! However, such are the hazards of MND/ALS. As my friend aptly puts it, this Humpty Dumpty life. By the way, apart from stiffness first thing, my back is pretty much as it was. Thanks for your concern.

And also, by the way, my remarkable and courageous friend and fellow-author, Jozanne Moss, celebrated her birthday on Monday - what an achievement!

Thursday, 8 September 2011

I was sent some amazing photos today, with the heading "Attitude is everything". They are of a little boy with effectively no legs. No doubt his life's not easy, nor for his parents. And yet it appears he enjoys a pretty full life - and enjoys is the operative word. I've not included the pictures of him cycling, horse-riding and water-skiing....

Yet I've been wondering, in the light of the attention drawn by the courageous MP, Nadine Dorries, to the extraordinary rate of abortion in this country, what "independent advice" his parents would have been given assuming that from conception he was going to be born like that. "What quality of life do you think he'll have?" I imagine the questions, the counselling, would have tended towards the conclusion of abortion being the "kindest" thing all round. And that is what disabled people feel and fear all too often, that they are regarded as having a sort of semi-life.

South African athlete, Oscar Pistorius

One of the great things about the World Athletics Championships in South Korea last week was seeing some disabled events taking place in among the able-bodied events, and even the South African, Oscar Pistorius, on his artificial legs, competing at the top level 400 metres alongside fully able-bodied athletes. Tomorrow tickets for the Paralympics in August next year go on sale, and I for one am going to try and get some. There'll be nothing second-rate about the athletes or their performances. In fact you could regard their achievement as even greater than what we'll see at the real Olympics.

I think it's a shame that Nadine Dorries' amendment was defeated. It wasn't after all very radical, just ensuring the women receive clearly disinterested counselling if they want it before having an abortion. I'm hopeful that the government's promised consultation will honour "the spirit" of the amendment, and ensure that pre-abortion counselling is carried out by trained counsellors and rigorously monitored for lack of pressure - either way -, so that there is real choice for women and, therefore, for their unborn baby.

A programme Jane and I often listen to is Radio 4's No Triumph No Tragedy presented by their disability correspondent, Peter White, who's blind himself. This week he was talking to the remarkable Dr Lin Berwick, who was born with cerebral palsy, put in an iron lung at birth, affecting her sight. Her mother wouldn't accept the doctors' advice to let her die and took her home, and brought her up rather too protectively. At the age of 15 she went completely blind and was sent away to a school for the blind, which was the making of her. Wheelchair-bound she worked in a bank, trained as a Methodist lay preacher and set up a charity to provide holiday accommodation for the severely disabled and their families. Eventually she met, fell in love with and married a widower. He developed Parkinsons Disease after six years of marriage and, after a prolonged depressed decline, he died refusing his medication. During his illness she lost her faith. The interview was recorded a month after his death, and so her grief must have been at its most raw. But her bleak conclusion was if we are determined to cut back on resources for care and support for the disabled then we should not be so assiduous in our efforts to save them at the outset. Reflecting on her own life experience she concluded for herself it would have been better if she'd not been saved.

Listening, I reflected that I was hearing the honest voice of grief. And also that I'd read the selfsame sentiment in the Bible on the lips of Job who cursed the day that the midwife announced his birth. God's verdict on him was that he was unusually righteous and that he had spoken what was right; he'd been honest rather than mouthing platitudes. Maybe, after all, Lin Berwick is not so far removed from faith - as she seemed wistfully to imply. I've no doubt she will achieve her ambition of building another holiday home in Cornwall, named after her late husband.

Personally I can't agree that any life, disabled or not, should be written off as not worth saving or preserving. I agree that it takes resources and that there's a cost to pay. And I agree that we need to know when to let go, and that that's hard. But we have the ingenuity to make life fulfilling despite all appearances. We shouldn't give up. Maybe the little lad may grow up to be another Oscar Pistorius, or a Nobel prize winner.

Saturday, 3 September 2011

That Ray Mears has a lot to answer for. Jane and I were in a particularly sunny mood yesterday - well, it was sunny and hot of course, which helped. But it was just one of those times when we felt intensely fond of each other. However, you don't want to know about that, I'm sure. Suffice it to say, we decided to drop everything and go out for a picnic.

There's an area of woodland not far from here which we enjoy. It's quite wheelchair-friendly, with a large picnic area cleared in the middle. Not surprisingly, being the end of the holidays, there were a lot of families there too - which was fine. Fine, children out enjoying the fresh air, and making noise, as children do.

We found a picnic table in the partial shade. Three mums were nearby with multifarious offspring. One chap I noticed, say about 8 or 9, was on his own. He had a camouflage bush-hat and camouflage crop trousers on and a grey t-shirt. He seemed to minding his own business, idly bending over a sapling. Then he started to try tearing off its side shoots. His younger brother, as is their wont, drew his mother's attention to this. "Don't do that, Raymond!" (not his real name) she called out, before returning to her conversation. He stopped, for a while, and then resumed his activity. Despite one more maternal intervention, he eventually succeeded in completely stripping the young tree and bending it right over to touch the ground. I'm not sure what he was making in his imagination, whether it was the beginnings of a shelter or an animal trap. He certainly left behind him a pile of leafy branches and one sapling which will never survive to become a tree. Ironically Ray Mears styles himself as a wilderness bushcraft and survival expert - and has become popular through his tv series, World of Survival and Extreme Survival. They are quite educational and fun to watch.
However it struck me that young "Raymond" needed a bit more guidance on how to apply his hero's lessons in the real world; and then it struck me that probably there are very few lessons for the real world to be drawn from Mears' programmes. After all, the principle, "You don't need equipment, you need knowledge to survive in the wild", will probably, barring a freak accident or disaster, be of little use to his viewers. Like most tv, like ex-commando Bear Gryll's programmes, Mears basically provides watchable entertainment.

But if my assumption is right (and it may well not be) that young "Raymond" was influenced by what he'd seen of big Ray - the way he dressed and the sort of things he does on screen - then the uncomfortable question occurs, how else does what they see on television influence children's behaviour? I'm sure I'll be told there's no statistical correlation to prove it, but observation of little "Raymond" and actually of big adults like me suggests a significant influence. (Otherwise tv advertising would not be the big business that it is.)

I suspect, nevertheless, that it will take more than the efforts of my young friend to dent the beauty of these shared open spaces. And, to be fair, I suspect that Mr Mears has done more to open eyes to the wonders of the natural world than to encourage incipient vandals! Certainly as Jane pushed me round the track that circles through the common, we saw a world of infinite variety, charged with the grandeur of God - which even my new camera couldn't do justice to!